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In addition to physical symptoms, individuals with ichthyosis can experience social challenges due to looking different from others. This quality-of-life impact can contribute to a common set of mental health symptoms.

In a 2020 study, researchers found that both depression and anxiety are associated with ichthyosis in adults and children, with increased quality of life burden due to disease correlated with a greater likelihood of depression and anxiety. Among adults diagnosed with any form of ichthyosis, 34.4% screened positive for depression and 27.3% screened positive for anxiety.¹ Among children diagnosed with any form of ichthyosis, 30.2% screened positive for depression and 37.7% screened positive for anxiety.1 Although we recognize that depression and anxiety can be affected by multiple factors, such as life stressors and family history, the high prevalence of depression and anxiety in individuals with ichthyosis underscores the need for clinicians to provide depression and anxiety screening regularly to those affected with ichthyosis.

This association of skin disease and increased prevalence of depression and anxiety is not exclusive to ichthyosis. Other skin diseases with visible disease manifestation, such as psoriasis and atopic dermatitis (eczema), are also both independently associated with increased rates of depression and anxiety in both adults and children.^2,3

Addressing Unique Challenges of a Rare Disease

As a rare skin disease, there is still much to discover about ichthyosis. Treatments are often time-consuming and require a multi-pronged approach to alleviate uncomfortable symptoms, such as itch and dryness, and to improve quality of life. In contrast to other disorders, for which targeted therapies can lead to near-complete resolution of symptoms, therapies for most forms of ichthyosis remain under development. As a result, the mental health burden in ichthyosis may be alleviated at a slower rate compared to other skin diseases. However, there are pathways to getting the needed support.

Medical Support. Understanding ichthyosis as a disease and learning to live with its associated symptoms may improve quality of life and treatment adherence in individuals with ichthyosis. A dermatologist who diagnoses ichthyosis and develops a treatment plan with the patient can best support patients to manage the symptoms of ichthyosis. The managing dermatologist can provide the most up to date information about ichthyosis treatment and collaborate with other medical professionals to suggest appropriate clinical trials. Researchers have suggested that screening for symptoms of anxiety and depression should become standard of care in routine management by dermatologists as a part of an integrative management plan.¹ Additionally, talking with one’s primary care doctor can provide referrals to mental health providers to help manage the possible psychological sequelae of ichthyosis. Mental health providers include social workers and psychologists who can provide psychotherapy (talk therapy), as well as psychiatrists who can prescribe medications which can be helpful depending on the severity of mental health symptoms.

Caregiver Support. Living with a skin disease not only affects the individual, but it also affects caregivers. Studies have found that caretakers of individuals with psoriasis and atopic dermatitis experience psychological strain and report feelings of helplessness, exhaustion, and frustration.⁴ While caregivers play an important role in supporting individuals with ichthyosis, it is important that caregivers also receive their own form of support, such as through a caregiver support group, as caregiving can be a mentally taxing responsibility.

Community Support. Connecting with a support community, both in-person and online, has been shown to be beneficial in mitigating the mental health impact of skin diseases, including ichthyosis. Living with a rare disease can feel isolating and be an experience that few peers can relate to. In a study in atopic dermatitis individuals, researchers showed that children in support groups had improved quality of life and mood, highlighting the importance of advocating for a support community in any skin disease treatment plan.⁵ Because ichthyosis is a rare disease, when in-person support groups are unavailable, online social forums may foster a sense of belonging to a community. These social media opportunities can facilitate meaningful interaction with others also living with ichthyosis, thus allowing individuals to feel less alone.

The author reports no relevant financial disclosures.

1. Sun Q, et al. Ichthyosis affects mental health in adults and children: A cross-sectional study. J Am Acad Dermatol. 2020;83(3):951-954.

2. Hedemann TL, et al. Associations between psoriasis and mental illness: An update for clinicians. Gen Hosp Psych. 2022;75:30-37.

3. Appiah MM, et al. Atopic dermatitis Review of comorbidities and therapeutics. Ann Allerg Asthma Immunol. 2022;129(2):142-149.

4. Kelly KA, et al. Skin disease in children: Effects on quality of life, stigmatization, bullying, and suicide risk in pediatric acne, atopic dermatitis, and psoriasis patients. Children (Basel). 2021;8(11):1057.

5. Blessmann WM, et al. Improvement of pruritus and quality of life of children with atopic dermatitis and their families after joining support groups. J Eur Acad Dermatol Venereol. 2008;22(8):992-997.

6. Sy W, Lamb AJ. Atopic dermatitis disease education. Adv Exp Med Biol. 2017;1027:179-184.